If you are not Stage IV but have questions, you may post here
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Elennnnna90 , sorry to hear about your pain. It could be a side effect of Tamoxifen - I know I had severe joint pain on Tamoxifen plus Lupron also causes joint and muscle pain. Of course if your pain is constantly increasing, it is better to have a check up with your oncologist.
My bone mets pain was bearable in the first 2-3 months so I thought it was just my drugs causing side effects. When it gradually started to get worse, I went to my doctor who referred me to the onco. A MRI followed by a biopsy confirmed the bone mets.
If your pain is getting worse, a call to your doctor is not a bad idea. Better to be safe than sorry! Good luck!
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My best friend was put on Afinitor and Exemestane about 3 months ago. She immediately developed pneumonitis and had to stop the meds for two weeks. Her counts were down during this as well. She took heavy doses of steroids to help combat the effects the pneumonitis was having on her lungs. She can't breathe and its horrible to see her like this. She's back on the meds now and was given two inhalers but they aren't helping. Does anyone know of anything she can do to relieve the symptoms she's having with breathing, coughing, etc.... She is also considering going to Tiajuana for treatment that is alternative to traditional meds. I am at a loss how to help her! She was on Ibrance for 3 years and she stopped responding to that treatment.
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Hi Ladies,
I have been recently diagnosed with IDC and don’t know the stage yet. I asked my doctor for ct scan of chest,abdomen and pelvis that came clear. I had a bone scan today and while doing that they did the three dimensional picture and additional pics of my knee. The technologist told me that when doctor wants to know more they do it. I am scared to death that it might have gone to my bones
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Dear Flo, do you have pain or another reason to suspect bone mets?
There may be osteoarthritis or something non-malignant going on with the knee and they are being careful to get good pix since this is a baseline scan. Don't jump to conclusions, you might injure an ankle or another joint!
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Flo, I'm just stage 1, and I had every scan imaginable in the last year. It's all for future comparison. It was, however, interesting to find out just how widespread my arthritis is. No wonder I creak, crack, whine, and moan! My oncologist ordered a pre-op non-contrast CT scan, which found all kinds of nasty things, but none related to breast cancer. Just because you have breast cancer doesn't mean you won't have other crap going on, too.
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hi all,
I have some questions about my mom and I would just like to get some opinions. She is 65 years old originally diagnosed about 8 years ago. She had her first recurrence in her spine almost 2 years ago. One year later she had another met on her spine and now she has two more spots on her back, the original recurrence (which was operated on and radiated) is now progressing and she has a met on her jaw. She is currently taking Faslodex.
Should she be doing more?
What is a long term prognosis for someone like her?
She has a lot of fatigue but generally doing OK
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Hi Stephanirgee, stage IV BC is unlike early in that it is not curable but can be controlled somewhat by the treatments given. Those treatments are selected by the oncologist with the view of giving the best quality of life while slowing down the progression of the disease.
Your Mom sounds like she is doing very well and handling the side effects of the drugs. Even though you may feel that there is more she should be doing, what she is doing is a powerful treatment even though it is 'just two injections' per month. From what you say her se from this drug are minimal and that is a good thing.
Be at peace, your Mom is doing everything she needs to in order to spend more time with you.
Love n hugs. Chrissy
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thank you, I appreciate the response. I guess my greatest concern is how quickly spots keep coming up but she has only been on the faslodex a month or so, so patience is key.
My other question would be regarding if the pattern of the disease is hereditary. I also had breast cancer but I am a carrier of the brca gene mutation but my mother does Not. I inherited the gene from my father so I wonder if my cancer is hereditary from her (we are both ER/PR+)or from the gene and if her recurrence has any indication for myself, you know what I mean?
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Stephanirgee, I'm not a doctor so I can't tell you a definitive answer to your question........ I do understand what you mean. Having been stage IV myself for ten years I can tell you from experience that every persons cancer is individual which says that even though we were dx with the same sub type it doesn't mean that our cancer will follow the same path or respond to the same treatment.
I fully understand why you ask the question but yours may never follow the same path as your Mom's......this is a question that only the fullness of time can answer.
Faslodex is a good medication and has worked well for many so hopefully your Mom will get a good long time before further progression is found.
Love n hugs. Chrissy
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Xgeva or Zometa are also given for bone mets. Is your mom on one of those
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hi I’m wondering how most of you girls’ mets were found? Thanks
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ucf, I found a lump in my breast six days after an annual mammogram. It was biopsied and found to be malignant. After a number of different doctor appointments andprior to scheduling chemotherapy, my oncologist ordered a bone scan. She wanted a baseline scan to compare to any future scans. When it showed suspicious activity, she ordered a pet scan and it was determined there was bone metastases.
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Ucf, I went for my five year checkup, for which I was six months overdue, and while being examined I winced in pain so doc sent me for nuclear bone scan and whole body CT. When the report was given it was discovered I had bone Mets. I had a lot of pain prior to the scans which should have been an indicator for me.
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I still saw my Onc yearly even after 17 years from my initial BC. He didn't find anything during my checkup. 9 months later I found enlarged lymph node around my collar bone. A PET scan found the spots in my bones. I was in shock as I had no pain from the mets.
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Stephanie, good idea mentioned above about Xgeva. Is mom only on Faslodex? Have they discussed adding Ibrance to it? It distrusts the cell cycle and is a bigger hammer in delaying progression
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yes, just yesterday they prescribed Ibrance. The doctor first wanted to see if faslodex alone could work but her bloodwork has gotten worse and not better so he has added ibrance.
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I am very worried. I had a seizure that woke me from sleep a few days ago. That day I also had a mild hallucination. I have spent allot of time in denial and trying to minimize what happened. Can anyone tell me what they know or have experienced with this. I need to call my oncologist. From what I have read tamoxifen can cause seizures and mild hallucinations after a few years. I have been on it almost 5 years. I am worried about mets to my brain.
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Hi Bcky, seizures and hallucinations are two very good reasons to notify your onc......they can be side effect or something else more drastic. It is important that your onc know about both so they can be investigated as soon as possible. Good luck.
Love n hugs. Chrissy
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2 more taxols!! With the loads of supplements and icing for the entire infusion and pre meds (about 3 hours) no neuropathy yet. BMX scheduled for aug 19. Super excited for this to be over for my mom but also super anxious and scared for her MRI prior to surgery. Any positive thoughts? I can't stop worrying that the chemo didn't kill all the cancer cells. She didn't have many SEs either which worries me
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ok thanks Chrissy B
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Hi everyone, can anyone tell me if weight loss a sign or symptom of recurrence? I recently lost like 5-10 lbs in a couple of months. I recently joined a gym and work out five days a week. However I think it's a short time to lose weight. I don't have any other symptoms. Thank you.
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If it was in a week, I'd be alarmed. Congrats on the weight loss.
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It is. But as we well know it is a common occurrence unrelated to cancer as well. I think there may be a subtle difference in a weight loss - according to the scales I lost at most 1 kg while many people commented on my weight loss. So the metastatic weight loss is more related to how one looks than objective weight loss. I did not have any other defined symptoms until a month ago either - there were some fleeting ones that now in hindsight make sense.
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Normal weight loss with diet and exercise is one to two pounds per week. Working out five days a week certainly could be the cause.
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This has probably been asked and answered many times in the thousands of comments in this thread, but my big question is, how was your mets found? If not de novo, was it in your normal follow-up screening? Did you have symptoms that led to scans? Is there a difference if it is organ-based mets vs bone mets? Thanks for any help understanding the process.
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I had symptoms- shortness of breath on exertion, tachycardia and unproductive cough. I started having symptoms very late, my lungs and mediastinum were riddled with large and multiple ones.
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I had no symptoms and actually felt great both times they found mets (first in 2006, second time in May 2019). First time gynecologist was doing a routine annual exam, and found a polyp on my cervix. She sent it out for pathology, and it was mets. Second time,my tumor markers (CA 27-29) kept going up over the course of about a year, but all scans were negative until a year out. Then they found mets in my liver. I think metastatic breast cancer can present in many different ways.
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indeed, all depends where and how big
BevJen , did they do PET scan and did not find liver metastasis during that year?
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MountainMia, tho the question has been raised before, I always find the answers interesting on how someone's mets were found. I am a de novo gal. I found a lump in left breast six days after my annual mammogram. A biopsy ruled it malignant, then I had a series of dr. appts. to determine course of treatment. Prior to beginning chemo, my onc ordered a bone scan for what she said was a baseline. When that showed suspicious activity, I had a pet scan which reveals bone metastases to rib, scapula and hip
. I didn't really have any kind of symptoms that shouted “something’s not right!” I was somewhat more tired and took long naps, but I’d always been a napper and I chalked it up to middle age. I also had mild soreness in my hip but also attributed that to age.
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Anotherone, BevJen, and DivineMrsM, thank you for your answers. Even with only 3 of you (so far,) it's interesting and kind of frightening the range of possibilities. I'm not yet done with my (first?) treatment and don't know yet what follow-up will be involved, whether tumor markers will be tracked, MRIs will be ordered based on my dense breasts, or what. My docs seem to be minimalists so I don't have a clue what is their standard plan, or what I should push for. Thanks again.
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